Note for Caregivers

Like so many things we do in life, when we are posting online (whether that’s a community like ours or on social media) we have to weigh risks and benefits. Too much caution or too little caution both incur risks.

Too much caution online , and you risk not getting the support, help or information you need. For example, out of excess caution you do this kind of thing:

  • Give yourself a super-inscrutable screen name, like H3nrymx+b . Right away you look like a secretive weirdo. Good luck with people even clicking on your posts, or if they do, taking you seriously.
  • You live in the USA, but refer to where you live as “my province” and pretend to work in fast food, when you’re really a computer programmer.
  • You refer to your male brain-injured child as Karen, and you alter their story substantially.

Then you start asking for support or advice, or you begin offering pearls of wisdom to others. You can be sure that your experience in the community will be pretty unsatisfying, mostly because you walled yourself in. Other members sense that, and at the end of the day, people know there’s something really fishy about what you are saying because things just don’t add up.

Too little caution online, and you risk people “out there” taking advantage of you, or attacking you in some way. For example, out of lack of caution, you do things like this:

  • Use your full name in public parts of the community (like on a post – all our posts are visible to the public)
  • Openly reveal where you live and what you do for a living
  • Tell your child’s real name, age and location on a public post.

Then one day someone who knows you and has a serious issue which involves you (might be insurance, an employer, a government agency, or even a nosey neighbour) googles your name and WOW … They find your posts on and they dig up some of the personal information you posted there and it’s very interesting and useful in their campaign against you. See where we’re going with this?

Somewhere in between is the happy medium: you protect yourself without making yourself seem overly secretive and without withholding the very information that people would need to support you, or that they would need in order to benefit from your experience.


  • You make your screen name “RbtX”. Who can relate to, or pronounce, that? “Bobby” is better and only a little bit revealing. “Grasshopper” totally disguises your real identity but has positive connotative qualities.
  • On a public post, you introduce yourself as “I’m Rob, a lawyer in Seattle, and my specialty is end of life legal issues”. Someone might be able to trace you from that, look at other posts and collect things to be nasty and mean to you about. (Goodness knows, you don’t deserve that.) So instead –
  • On posts, you refer to what you do as “I work in the area of end of life issues, and I live on the west coast”. Pretty hard to figure out who’s saying that. But on your profile (which only members can see) you say you’re a lawyer in Washington State, a specialist in end-of-life issues.

Someone who’s a member, after getting to know you online, might be able to piece a few things together, but they’re unlikely to turn on you because, well, they’ve got to know you, and you’re a good sort.

By the way, you should know that we size up every new member and make an educated guess about whether they are who they say they are, and whether their disease story makes sense. If we’re not sure, we don’t approve them. We think we get it right most of the time, and by far the majority of our members are genuine.

The moderators here use their screen names all over the place on all of our communities. When we have personal contact with people, though, we’re not so hung up about revealing more about ourselves, especially when we’re pretty sure the person is trustworthy. For us, that’s a reasonable risk/benefit ratio.

Social media and online support can be a minefield. On the other hand, avoiding online support and social media can deprive you of some wonderful things in life. Previous generations could not possibly have imagined the rich support, friendship, camaraderie, knowledge and kindness that is shared on communities like ours every day. Please don’t deprive yourself of those wonderful things.

Becoming involved with an online community like this can bring incredible blessings. Many members’ stories are rich with examples. You just have to get involved with your eyes open, and use some good sense.

All the best to you, from
Your Moderators and Moderator Support